Emma is featured on the blog – Thinking Person’s Guide to Autism today in their Slice of Life series that they’ve been running through the entire month of April. For those unfamiliar with TGPA, it is a blog for and by autists and parents of autists. On their website they write: “Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”
As Emma couldn’t answer many of the questions, I put together a scrapbook of photos, an audio clip of Emma singing, combined with her answers to the questions she did answer either verbally or through typing. A couple of the questions I did my best to answer with my own thoughts, whether Emma would agree with them or not, or how she might have answered them were she able to, I do not know.
In preparing the various “answers” for the Slice of Life series I read many of the other profiles TPGA has run everyday this past month. It was through reading those other profiles that I felt compelled to write the Fear post last Friday. I fell into that hell of comparing Emma to others, adult autists and other autistic children profiled. Each and every profile seemed to me to show someone far more “advanced” according to NT standards than Emma. Because of those feelings, I felt all the more determined Emma should be represented, even if her answers were through other methods of responding than by the more traditional verbal answers.
“Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.”
There are so many things people believe regarding autism that I would like to help dispel. Here are a few of them:
Just because someone cannot speak, does NOT mean they have nothing to say.
Just because a person cannot say, “I love you,” does not mean they do not.
Just because a person is not able to express their feelings in ways neuro-typicals can recognize, does NOT mean they do not have them.
Just because someone does not look at you, does NOT mean they do not see you.
Just because someone appears not to hear you, does NOT mean they do not.
Just because a person has been diagnosed with autism does not mean they cannot learn. It may take longer or it may be quicker than a neuro-typical child, but they can and do.
Thinking Person’s Guide to Autism is the site I wish had existed when Emma was first diagnosed. It is the blog I urge anyone who is autistic or with a child who is, to go to.
*And if you haven’t already done so, do vote for your favorite Top Autism Blogs, (you can vote for as many as you like.) I hope Emma’s Hope Book will be one of them!
To read my most recent Huffington Post, click ‘here.’
To read my guest post on Special Needs.com, click ‘here‘
Bravo Emma! The last image is indeed one of Bliss. Perfectly captioned. Thank you to The Thinking Person’s Guide to Autism and to Emma and Ariane for both a place to share and for sharing.
Yesterday I read Elie Wiesel’s Night. His memoir of being Jewish in WW2 Europe and his experience in the concentration camps. Profound. The book also included his 1986 Nobel Peace Prize Acceptance speech and he spoke of why he writes,
“And then I explain to him how naive we were, that the world did know (about the camps) and remained silent. And that is why I swore never to be silent whenever and wherever human beings endure suffering and humiliation. We must take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Sometimes we must interfere.”
And although Autism is not the Holocaust there is the opportunity to tell the world the story of differences amongst people and to encourage compassion and kindness and respect for those differences by telling our stories.
As a mother of a child with autism, a heart-felt thank you goes out to you for not being silent, but for facing your very real fears and sharing.
Thank you so much Charlotte. I remember that speech, thank you for quoting it here. “Silence encourages the tormentor, never the tormented.” I had to google the other quote I always loved because I couldn’t remember it verbatim, he said – “to remain silent and indifferent is the greatest sin of all.”
By the way, I always love reading your blog.
Me again. I wish I could type this in little letters, a whisper, for I don’t mean for my enthusiasm on this topic to get annoying. But Yes! the quote in your reply, that is why I am writing about autism. To answer a quote with a quote, “Our lives no longer belong to us; they belong to all those who need us desperately.”
To share our story and to maybe help someone who is struggling, is that not the apex of being human? Well, to me it is and so happy to have a like-minded partner in that belief.
Annoying – NO! Insightful, interesting – YES! Always love reading your thoughts, whether it’s over on Life and Ink or here or somewhere else in the comment section.
Just lovely.What a beautiful sentiment Charlotte. Well done Emma and Ariane.
Thank you Liz. I showed the piece to Emma and asked her if she wanted me to read it to her. She said she did. I read all the comments left and then said, do you want to write anything? She nodded her head, and I asked, “What would you like to say? She said, “My name is Emma.” Then she asked me to read the post about going to the zoo. This is the first time she’s shown any interest in the blog.
I liked the pictures of her dancing. I am curious about the string. I hope we get a chance in the years to come to see emma’s skills grow so maybe in a couple years she can be more involved in interviews even if she still needs your help.
Thank you so much for leaving a message here. Her string seems to be part of an evolving group of objects that began when she was around two years old. Though it may have been earlier and we just didnt recognize the other items as such. The first was a finger puppet, then a series of long, thin dolls, which gave way to various sticks, then balloon strings, (the ribbon that balloons are tied to from Birthday parties) and finally various types of packing materials from packages the mailman or ups man delivered. Her string was originally such an item and then she took it and transformed it into this other thing. She holds it by the taped part and flips it around so the string part whips around. I am hoping she can write and speak entirely on her own one day. I guess, of everything I hope for Emma, this is my biggest goal. Because as much as I try to understand and interpret as best I can, my ideas, thoughts and voice are a poor substitute at best, and I am sure I get things wrong more often than I get them right.
Oh absolutely! I’d love to see that someday. But in the mean time, seeing her develop those skills? that is awesome.
I know that sometimes, for things like forms (which some of the written interviews seem like) I sometimes need help figuring out what exactly is being needed for a question. With the TPGA interview, I knew whatever I thought it meant would be fine.
But sometimes it seems like wrong answers could have consequences I can’t see, so I still get help with figuring out what is being asked. And over time, that help has allowed me to get better at guessing an answer when there isn’t help around.
Yes, developing those skills, which she often does not want to do because it is so difficult for her. But we continue to push her anyway. We try to break her sessions down into 20 to 30minute increments so they aren’t too grueling and break them up with the things she loves doing, like music and dancing.
I will look for your interview, I know I read it, as I read all of them when I was first sent the questions. At the time I read the other interviews, everyone’s answers sounded so well thought out, so you must have done a great job answering them! I understand that concern of wondering whether something said will have unforeseen consequences. I’m so glad to hear you’ve found someone you can rely on to help you. I worry about that for Emma. If something happens to me, will someone be there for her. I know there are people who would, but I worry all the same and try hard not to worry at the same time!
Hi, Ariane! I had noticed that the superpower question for the interview was left unanswered. I just wanted to let everyone know that Emma does, indeed, have a superpower. Emma emanates an aura of bliss, which has the unconditional power to make others smile. The second I walk into her aura, I smile uncontrollably. She needn’t do or say anything: it simply emanates from her. Even after some of the worst moments in my life (i.e. my grandmother passing, a devastating break-up, and a heated argument with a professor), her superpower radiates right into my soul – giving me a positive outlook and making me smile. I’ve seen Emma work her magic on others too but I don’t believe any of them were aware of the powers at play. I’m not even sure if Emma is aware of her superpower. Either way, I’ve seen its existence and it’s undeniable. I am forever grateful to Emma for allowing me to share in her bliss. You’re pretty amazing too, Ariane . . . but no superpower 🙂
Hi Joe! Thank you for adding this, it is so beautiful and accurate. Yes, sadly I have no superpowers, but if I did it would be to heal our world of prejudices, of hatred, of intolerance. Which pretty much sums up Emma! She is without prejudices, without hatred, without resentments, without intolerance of other’s differences, and we get to be around her all the time! We are the lucky ones!!
By the way, I did write something to that question on the TGPA profile, though I like yours better – I wrote:
“Not “superpowers,” per se, but talent and a love of performing. This is Emma singing Que Sera Sera with our friend Alycea Ench: http://www.emmashopebook.com/wp-content/uploads/2010/04/Emma-Singing1.mp3